CKD Registry Could Help Physicians Improve Patient Care

Nancy Fowler Larson

November 04, 2010

November 4, 2010 — A healthcare information registry of patients with chronic kidney disease (CKD) could result in enhanced treatment, according to a study published online November 4 in the Clinical Journal of the American Society of Nephrology.

Some 13% of US residents have CKD, a forerunner of end-stage renal disease, which requires dialysis or kidney transplant. The number of patients with CKD who are not dependent on dialysis is increasing — a trend that will likely result in higher Medicaid spending on end-stage renal disease, which climbed from $7 billion in 1991 to $30 billion in 2008. However, there is a dearth of information regarding patient care and outcomes.

"The Scientific Registry of Transplant Recipients provides such data for renal transplant recipients," write Sankar Navaneethan, MD, from the Department of Nephrology and Hypertension, Glickman Urological and Kidney Institute, Cleveland Clinic, in Ohio, and colleagues. "However, such a national data reporting system is not available for non–dialysis-dependent CKD patients."

The Centers for Disease Control is pushing for a national CKD surveillance system. The system would identify national and regional sources of patient health information — typically databases from electronic health records or existing registries — in a diverse array of medical settings.

Registry Holds Critical Information About Older, Diverse Population

The researchers developed their CKD registry using demographic, clinical, and laboratory information from Cleveland Clinic's electronic health records. The registry includes mildly to moderately affected patients who met the following criteria: 1 or more in-person meetings with a Cleveland Clinic healthcare professional; 2 estimated glomerular filtration rate values lower than 60 mL/minute/1.73 m2 more than 90 days apart as of January 1, 2005; and/or kidney disease diagnosis codes from the International Classification of Diseases, Version 9.

Characteristics of the CKD registry include the following:

  • it consists of 57,276 patients, 53,399 of whom met the glomerular filtration rate values, and 3877 of whom met the International Classification of Diseases, Version 9, diagnosis standards;

  • 69.5 ± 13.4 years is the patients' mean age;

  • 55% are women, and 12% are black;

  • stages 3 and 4 shared similar demographics and clinical data;

  • stage 5 is made up of younger patients and men and a greater proportion of blacks (38.9% compared with 9.9% in stage 3);

  • more than half of all registry patients (n = 30,594, or 53.4%) have Medicare as their primary insurance;

  • diabetes, hypertension, and hyperlipidemia are established in nearly 22%, more than 80%, and 74% of the patients respectively; and

  • for all comorbidities except coronary artery disease and hypertension, substantial conformity is demonstrated by κ statistics determining the agreement between the administrative data set from the electronic health records and the actual electronic health record reviews (<0.60 for coronary artery disease/hypertension, >0.80 for all other conditions).

"Our CKD registry is a unique data source rich with clinical data, representing a large population of patients with Medicare as primary payer, a large minority population, and a large geriatric population, which lends itself to answering important questions about CKD progression, treatment, and management," the authors write.

A number of limitations were stated by the investigators:

  • the use of less than 2 serum creatinine levels as a denominator may have resulted in misclassification of some kidney patients as having normal kidney function;

  • because the registry includes only patients who sought care, the findings may not be generalizable to the wider population or to other healthcare organizations; and

  • the registry lacks stage 1 and 2 patients and may be composed of an older population with more comorbidity because of the inclusion criteria.

Even so, the findings demonstrate that a practical, reliable, and legitimate registry for CKD and other chronic conditions with particular covariates is both possible and necessary.

"With a diverse population and greater details about patient characteristics, this registry provides a unique opportunity for outcomes research along with improving the care delivered to our CKD patients through quality improvement and innovative projects," the authors write.

The National Institutes of Health and the National Center for Research Resources support the authors. The Amgen biotechnology company supported the creation of the registry. The study authors have disclosed no relevant financial relationships.

Clin J Am Soc Nephrol. Published online November 4, 2010.

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